Friday, March 04, 2016

Why Canada's assisted dying regime must not be limited to the terminally ill

A kerfuffle has broken out in the Canadian news media about eligibility criteria for assisted dying. The Supreme Court of Canada in its decision is unequivocal that limiting access to include only people who are about to die would be violating the Charter rights of other patients. Here are the core criteria the Court set, an eligible person would be a ‘competent adult person who (1) clearly consents to the termination of life and (2) has a grievous and irremediable medical condition (including an illness, disease or disability) that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition.’ It is uncontroversial then that terminal illness cannot be a viable access threshold for the purpose of upcoming federal as well as provincial-territorial legislation. That hasn’t stopped constitutional ‘experts’ like Margaret Wente, a notorious columnist at the Globe and Mail to insist on just that. Experts celebrated in her piece include Harvey Chochinov, an anti-euthanasia activist appointed in the dying days of the Harper government to advise him on how to act on the Supreme Court judgment. Chochinov acted as a witness for the Harper government’s side during the trial. His evidence, obviously, did not convince the trial judge and her decision was upheld in what was a unanimous decision going against everything Chochinov argued for. It is no surprise that Wente, a writer not known for good judgment, celebrates Harper’s appointee on her Globe and Mail platform.

The Globe and Mail ran no less than at least three opinion pieces arguing that a parliamentary special joint committee as well as a provincial-territorial expert advisory group got it wrong when they included for instance people with intractable depression among those eligible for access to assisted dying. So, here’s a quick few notes on Wente. She writes that 110 psychiatric patients have been ‘euthanized’ in the Netherlands between 2011 and 2014.  The journal article she refers to actually notes that these were cases of euthanasia or assisted suicide, ie it is not the case that 110 patients were actually euthanized. Small difference in Ms Wente’s fantasy land.

Another highlight from Wente land, ‘The rationale [in the parliamentary committee report, U, Sch.] is that psychiatric patients should have the same rights as everybody else.’ Well, in Canada we have this little document called the Charter of Rights and Freedoms, and when we take a closer look at it, we will realise that competent psychiatric patients have the same rights as competent people who are not psychiatric patients. Labelling someone ‘psychiatric patient’ doesn’t miraculously do away with their Charter rights! Apparently the Globe and Mail does not have funding any longer for basic fact checking of the content the writers generate for its opinion columns.
Wente eventually claims that the numbers of psychiatric patients seeing their lives ended by assisted dying are growing fast. This is doubtful, given that the overwhelming majority of requests for assistance in dying from psychiatric patients are denied in the Netherlands. 2013 saw an increase in cases of euthanasia for patients with psychiatric illnesses. A total of 42 cases were reported—as is legally required—to the Dutch Euthanasia Review Committee. The 42 cases reported in 2013 compare against 12 in 2012. Of these 42 cases, 32 were investigated by the Committee in 2013 and the findings published. In 22 of these 32 cases, depression was mentioned as (one of the) the cause(s) of suffering. This brief, intermittent increase in cases is probably mostly due to the start of the ‘end-of-life’ clinic, an organisation that aims to grant euthanasia to all of, and only, those who fulfil the due care criteria in the Netherlands but who have been unable to obtain assisted dying from their physician. The start of this service in March 2012 led to a significant number of applications from patients who were determined to end their life by means of assisted dying, among them were a large number of patients with psychiatric illnesses (38% of applicants). Some 62% of these patients with psychiatric illnesses were refused an assisted death mostly because their death wish was judged to be more or less impulsive, and therefore did not meet the Dutch due care criteria. The Dutch Minister of Justice revealed in August 2014 in a letter to the Dutch Parliament that there were no signs of a further increase in 2014. Meanwhile, in Canada, Ms Wente claims as a fact dramatic increases in the numbers of psychiatric patients being euthanized. You need to do that, when all you have are 110 cases over a fair number of years, that don’t quite sustain claims of slippery slopes and out of control actions by laissez faire doctors. A number of those patients whose requests were denied eventually committed suicide by other means, a not uncommon occurrence among people with intractable depression. Among this small number (ie 110 people over a 4 year period in a country of about 17 million people) of psychiatric patients, the authors of the study that Wente goes on and on about in her column, looked more closely at only 66 of those cases, slightly more than half. It turns out that the majority of those cases consisted of patients suffering from depression. That is highly significant, because there are good reasons to make intractably depressed people (who can be assessed for competence and, because they are not imminently dying, for the endurance of their wish to die) eligible for access to assisted dying. I have published last year a journal article, co-authored by Professor Suzanne van de Vathorst, MD PhD, of Erasmus University Medical School in which we make the ethical case for why such people should be eligible for access to assisted dying, provided certain sensible safeguards are met.

Trudo Lemmens, a law professor at the University of Toronto has published two pieces in the Globe and Mail – apparently the ideological headquarter for this sort of activism. Not content with that, he published yet another piece (with more or less similar content) at the Impact Ethics website. I shall focus on the piece he has published there. Lemmens essentially has the same concerns that drive Wente and relies on the same evidence. He claims, ‘The [Canadian parliamentary, U. Sch.] Committee ignores the Court’s emphasis on the narrow basis of its ruling and the exclusion of “euthanasia for minors or persons with psychiatric disorders”. I encourage you to do a search for this quote in the SCC judgment and you’ll see that the Court actually did nothing of the kind. Nowhere does it exclude competent patients with psychiatric disorders from access to assisted dying. It’s plainly obvious already from the access criteria I began with, so Lemmens is using bits and pieces from rejected expert testimony to make his case. To be absolutely clear on this subject: there is no exclusion of competent psychiatric patients writ large in the Supreme Court of Canada judgment. Lemmens and Wente might not like it, but it is what it is.

Lemmens uses the same study that excites Wente to make the case that the Netherlands and Belgium have gone down a slippery slope that we would end up on if we made assisted dying available to patients who are not terminally ill. It is worth noting that the Supreme Court in its judgment explicitly rejects that line of reasoning. It writes, ‘The regime [in Belgium, U. Sch.] simply regulates a common pre-existing practice.  In the absence of a comparable history in Canada, the trial judge concluded that it was problematic to draw inferences about the level of physician compliance with legislated safeguards based on the Belgian evidence (para. 680).’ In any case, the study that is used by Wente and Lemmens to show how far down the slippery slope the Netherlands has gone, relies on the interpretation of 66 cases, of which the majority were patients with depressive disorder. Its authors conclude, ‘The granting of their EAS requests appears to involve considerable physician judgment, usually involving multiple physicians who do not always agree (sometimes without independent psychiatric input), but the euthanasia review committees generally defer to the judgments of the physicians performing the EAS.’ The important bit here is that requests for assistance in dying made by psychiatric patients involves considerable physician judgment, usually involving multiple doctors. That doesn’t look like powerful evidence of a country gone down the slippery slope to terrible abusive practices.

Lemmens eventually resorts to anecdotes from TV documentaries. We apparently have to take his word for it that the cases he describes are uncontroversial examples of abuse. It is my understanding that those who provided assistance in dying to the patients featured in the documentaries do not agree with Lemmens, so perhaps the story told by those who oppose the practice might be a tad bit on the biased side of things.

Remarkably, the Globe and Mail refused to allow for critical responses to these commentary style pieces. Because false claims were made in these pieces about supposedly terrible things happening to vulnerable mentally ill people in Belgium I asked an actual expert, Professor Jan Bernheim, MD PhD of the University of Brussels End-of-Life Care Research Group in its Faculty of Medicine for a reply to these diatribes. He kindly agreed to do so. It is noteworthy that the Globe and Mail chose not to publish his reply. At least a brief letter from the chairpersons of the provincial-territorial expert advisory group correcting the most flagrant error in one of the Globe and Mail pieces was published.

Contributions such as Wente’s and Lemmens’ do a disservice to the debate on what kind of regulatory regime we should introduce in Canada. Their campaign is difficult to understand, especially given the very small number of cases (anecdotes, to be frank) that opponents of a permissive regime rely on. I wonder whether it’s due to their inability to appreciate the suffering that many competent patients with intractable psychiatric disorders encounter throughout their lives. Or do they simply believe that such patients should just ‘stick it out’? The existential suffering patients with depression encounter, and that patients with intractable depression experience throughout their lives is equal to the most severe physical ailments. Empirical evidence from a large-scale study suggests that intensity of mental suffering, on average, is equal only to the most severe physical conditions. (Bernheim JL, Theuns P, Mazaheri M, Hofmans J, Fliege H, M.Rose. The Potential of Anamnestic Comparative Self-Assessment (ACSA) to Reduce Bias in the Measurement of Subjective Well-Being Journal of Happiness Studies. 2006;7(2):227-250.)


Several comprehensive surveys of assisted dying regimes across Europe as well as the Netherlands in particular concluded that there is no evidence that these permissive regimes put the vulnerable at increased risk. It is remarkable that that evidence is studiously ignored by campaigners like Wente and Lemmens. They are playing to public concerns about vulnerable psychiatric patients. We should be concerned about the suffering of many psychiatric patients, but the reality is that today, with the best available treatments, a large percentage of these patients do not consider their lives worth living. A few of those patients would avail themselves of assistance in dying. They are entitled to receive assistance once it has been established that they are competent to make that decision and once it is clear that their wish remains stable over time. The Supreme Court of Canada, in its wise decision on this subject matter heard evidence and concerns along the lines presented by Wente and Lemmens and concluded that we will be able to design a permissive regulatory regime that does not put psychiatric patients at risk, the same conclusion was reached by the parliamentary committee as well as the provincial-territorial expert panel in their respective reports. That is reassuring. I hope the upcoming governmental regulations both federally and provincially will be in line with the Supreme Court’s criteria and do not arbitrarily exclude competent patients with intractable illnesses that render their lives not worth living to them.